Lots of new ladies - let's have a roll call

tattoolydia1953 said:

Muggles45 you are not alone

I related so much to your story of being estranged from your child and not wanting family members to know. I can't explain it either. I however do have wonderful supportive husband. He is emotionally understanding but he does not understand why I don't want family to know. He asks me to rethink this because he says it will be harder for him to deal with at my death, if I don't beat this. I say, lets just wait until all my treatments are complete and what my chances are. At this point he is accepting this. He knows when I'm having a really bad day and tries to comfort me. He will see me about to cry and will try to cheer me up. However, he has never been a man to snuggle and hug, sometimes all I need is a hug. So I tell him, the best thing you can do today is give me a hug and tell me we are going to get through this. But sometimes I just look in the mirror, bald head and all, and tell myself that I am loved. You too are loved, first by yourself and then by all your sisters that are doing this cancer dance with you. You are in my prayers. Luv Lydia

Hi Lydia

What a nice comment you made to Muggles45.  I'm sorry that you too have family you can't see supporting you.  Sometimes the caregivers need the support of others as they are going through a LOT emotionally as they watch us and feel so helpless to "fix" it.  My hubby is a very quiet person and he wasn't ever intersted in a support group and that made it hard for me sometimes because I was afraid I was overburdening him and I wished he had someone to talk to.    I'm glad to hear you just asked for hugs- that's what I had to do too.  And GREAT that you could look in the mirror and tell yourself you ar loved- because YOU ARE!!!  Bald head and all... good news- it comes back.  I have just the shortest whisps of hair but filling in more and more each day- definitely not bald anymore - there is hope   Here's some sister luvs for you, prayers and (((HUGS))) keep us posted.

Hi Karen and Dawn, Welcome to

Hi Karen and Dawn, Welcome to our board. You will find the best and the brightest group of ladies here. Not to mention the love and support like none other.

I hope you are both able to put cancer aside and have a nice Christmas. This time last year (12/21) I was getting my last chemo treatment. You will get through this and find out that you are very strong people.

Please come back and let us know how you are doing.

Love and Hugs,

Cindi

Checking In

Thanks, Eldri, for initiating this.

 

I am from the San Francisco Bay Area, age 56. I underwent an open-abdominal full hysterectomy in Feb. 2015 that also included the removal of 31 lymph nodes (all clear). 

 

My pathology was confirmed by UCSF (second opinion) as a high-grade adenocarcinoma, mixed type, with some grade 3 endometrioid carcinoma, signet-ring cell carcinoma and a small amount of anaplastic carcinoma. I am Stage 3, Grade 3  (metastasis was to the right ovary). The words "rare" and "very unusual" were stressed in my pathology report.

 

I declined a clinical trial and all conventional chemotherapy for a number of personal and practical reasons. With some pointed questioning, I learned everything "was removed intact," and that the chemo was supposed to be a mop up. I had not even heard of "optimally debulked" until I began visiting these message boards. I decided to take a chance, based on hope and optimism, although I had learned that my mother, who died at age 59 of stomach cancer, 30 years ago, also had some signet-ring carcinoma. Her case was more extensive than mine: she may have been stage 4. She did the chemo and was gone in five months.

 

When asked about my prognosis if I "did nothing" (ie: declined chemo), my doctor replied that it was hard to tell, but he had thought I would live for two years (gone by 2017). He did add a bit later, though, if I lived to three years without a recurrence that I would be "considered cured," as the chances of the cancer coming back were, as he put it, "very, very slim." However, he understandably emphasized concern because of the high-grade nature of my case.

 

I began working with a holistic doctor (whose protocol was designed to be complementary to chemo) and Iadded mistletoe (still doing this), some IV Vitamin C infusions (did those for a number of months) and some supplements. I take the CA-125 every two months and am due for my next 6-month scan in February, which would be my second "cancerversary."

 

I pretty much radically changed my diet (very limited carbs) to mostly a ketogenic one and I truly believe this has been a big key. I profoundly appreciated the postings about diet by Tethys41, who is still active on these message boards. She has been very inspirational!  Listen to her advice!  Another person is Claudia, whose handle is something like California Artist.

 

I started adding back more carbs as my health seemed to stabilize. I had lost quite a bit of weight before and after my diagnosis and surgery. It was hard to tell how much of it was from the cancer or from my diet -- I had been working to trim down a bit a year or so before my diagnosis. But in this past year, I was getting crazy hungrier, quite possibly due to the energy I have been burning off with the increasing of physical activity. I have also read that the mistletoe is, among other things, supposed to stimulate appetite and help you gain weight. I honestly just don't know what increased my appetite; I just have experienced the results. With some input from my doctor I began adding more carbs.

 

As a result, I have been able to gain back around 10 lbs. since last year (hear the sigh of relief). 

 

So ... fingers are crossed .... My scans have been clear and CA-125s have remained stable. I feel very good and energetic and have done quite a bit of travel and have mostly cleared out the jungle that is my back yard. The dog is happy with her walks -- in the summer/fall we were up to 4-5 miles almost every day. My blood pressure is what it was in my 20s and my TSH is optimal at 1.6. Presurgery it read from a high of 8+, then dropped to a bit above 3. It is reassuring to not only feel well, but to also have some numbers to back it up. 

 

I am still on edge about recurrence when something is a little off, as in yesterday when I had an upset stomach for a bit. I worry about jinxing myself. Other than that I am extremely grateful for my cracker-jack surgeon and calm-and-effective holistic doctor, as well as my family. I don't know what they have been saying about my decisions behind my back but, at least to my face, they seem supportive. Ha!

 

I also would like to think that my mom is hanging out somewhere with a big smile on her face, pulling for me to make it to three years. 

 

 

My best to all of you!

 

MAbound said:

My CSN Space

These periodic roll calls are real helpful, but then you always have to come back to find this thread when you can't remember these particulars as time goes on. I'd like to propose that people try to find the time to put this same information in their "My CSN Space" so we can click on screen names for the info we want to recall in whatever thread were currently reading.

But in the spirit of not being a party pooper, here's my stats:

I'm Pat, 59 years old, living outside of Buffalo, NY. 

My PCP sent me for a biopsy in late March because I still hadn't gone into menopause and the results showed a grade 3 cancer. They weren't sure if it was cervical or endometrial or possibly even both. The oncologist staged me as a I or a II in his office, but that was his preliminary guess or him just breaking the news to me slowly. Every time I saw him, it seemed like things were always worse than originally thought.

I had a radical abdominal hysterectomy, BOS, sentinel pelvic & para-aortic lymph node dissections, omenectomy, and pelvic wash on my eldest's birthday in April (note the irony of that!). It took over a month and 3 different labs to pin down the results, but I ended up with Stage 3a (since changed to 3c), grade 3 endometrial adenocarcinoma. They decided that instead of 2 cancers that mine originated in the neck of the uterus and grew down to the cervix and also up into the fundus. Instead of 30% myometrial invasion as originally thought, it was changed to 70% because the uterus is thinner at the neck than in the fundus. It's an important distinction because it impacts treatment, particularly the need for radiation in addition to chemo. I had one positive pelvic lymph node on each side that I was originally told is read as being negative (why I was 3a for a while) but then minds changed and I was upped to stage 3c. My para-aortic lymph nodes and omentum were negative. My pelvic wash was inconclusive. One ovary and the opposite fallopian tube were involved although the fallopian tube may have been contaminated during dissection.

I started 6 cycles of Taxol/Carboplatin on May 18 and finished on August 31st. The Taxol got switched to Taxotere starting with the 2nd cycle because I developed intensely (unbearable!) peripheral neuropathy from the Taxol. I also started getting B12 shots monthly to help with the neuropathy and used hpyothermia mittens and slippers during and between infusions. I had more issues with heartburn than nausea and so used Pepcid AC to deal with that. Constipation was an issue for which I took Miralax 2x/day and Senekot-S as needed. 

I had a negative PET scan Sept. 19.

I had a 2nd surgery to repeat the pelvic wash at the end of September. Positive results meant that I wouldn't need to go through radiation therapy because that would no longer be able to cure me and negative results meant that my oncologist was going to advocate for me having radiation therapy. The results were negative.

I tried very hard to find a reason to refuse radiation therapy, but I really had all of the factors that made it something I had to reconcile myself to: Stage & grade, location of origin, lymphvascular involvement, greater than 50% myometrial invasion. I've had 25 rounds of pelvic radiation (3D-CRT) with 5 rounds of a "boost" to the vaginal cuff area that I complete tomorrow (ding! ding! ding!) It's been easier than chemo physically, but harder mentally to get through this. It just felt like I might already be cured by the chemo and have just been destroying healthy cells. It was really hard to submit to this, but I'm not sure I could rest easy without having done all that I could to fight this monster. If I learned anything through all of this, its that what I do in my normal life matters a lot to my family, so I did it for them. I'm kind of still hoping it wasn't a mistake.

I have a follow-up with my gyn onc in a few weeks when I will find out if I'm still going on hormone therapy for the rest of my life, then it's check-ups every three months. I'm really hoping the side effects from the radiation don't last too long so that I can start taking some trips to see my dad before he dies (92 and possibly has bladder cancer) and my kids on the east coast. There's so much on my plate that's been put on hold during treatment that I'm going to focus on that to keep thoughts of recurrance from worrying me. We'll see how that goes. 

I recently got some genetic testing results back. Insurance would only cover testing for the BRCA 1 & 2 genetic mutations (I'm negative) and for Lynch Syndrome (I'm positive!). Lynch Syndrome puts you at higher risk for a number of cancers, but especially colo-rectal and endometrial. It probably means a slew of annual screen tests are in my future and that my kids and grandkids need to be tested, too. If any of you are interested in learning more about how a Lynch Syndrome finding is managed here's a good link: 

http://genefacts.org/index.php?option=com_content&view=article&id=492:management&catid=113:lynch-syndrome&Itemid=665 

Pat

 

 

 

Lynch Syndrome

Hi Pat, I just joined CSN today in searh of info. on UPSC. But in reading your comment, I just want to make sure you've looked into Keytuda/Pembolizumab per http://www.onclive.com/web-exclusives/fda-review-continues-for-pembrolizumab-in-msih-cancer. ("Defects in MMR commonly lead to microsatellite instability, which can be found in most cancers, including a majority of patients with hereditary nonpolyposis CRC (Lynch syndrome). Without this repair mechanism, the mutational burden is generally higher, suggesting a higher likelihood of developing cancer. In total, more than 80% of patients in the MMR-deficient arm were positive for Lynch syndrome." ...In the 48 patients analyzed from the study for the ASCO presentation, those with MMR-deficient CRC experienced a DCR of 92% compared with 16% in MMR-proficient tumors." Wishing you all the best

Lots of new ladies - let's have a roll call

Hi I am Barbara 68 years old living in SouthEastern, Virginia. I had total  Robotic Hysterectomy Nov 29, 2017  by Gyn Oncologist, one lymph node only taken was positive(could not find others on the other side as were very small), wash clear, spread to cervix both tubes and one ovary. Uterine serous carcinoma 3C. I am also diabetic. My Oncologist has recommended Sandwich therapy (Carboplatin and Taxol) starting Jan 12 2018 and radiation then chemo again I will have a port put in as veins were a big problem during surgery. My Mother had Uterine stromal sarcoma in 2001, said was not in lymph nodes so no therapy given but it came back in her vagina  18 months later when she then did chemo and passed away 6 months after chemo when it stopped responding to treatment. I am apprehensive about the chemo and radiation as I was with her for all chemos and watched her get weaker and weaker and die. Hoping to find some information and hope here.

 

A newbie!

Sorry I didn't see this thread before.

My name is Karen.  I'm 59 but don't look a day over 58.  (see I still have my sense of humor)  Currently waiting for a total hysterectomy.  Yes, they are taking all my parts out probably in January but don't have a date seeing  I have been waiting already 3 weeks and have 2 weeks to go just to see the gyno-oncologist.

I've only had a gyno at this point that wanted to do the surgery but we found the "expert" I guess.  And very fearful, tearful, disgusted and yes, I do pray a lot.  Have a Priest I see when I can and he is available.  I suppose at times I'm being selfish.  Afterall, I'm close to 60 and hell!  kids are born with cancer, but still not thinking it's time for me to go, but that as my Priest says "it's God's Will."

Sorry for the gloom and doom.  But that's where I am right now.  It's Christmas, I am so afraid of the new year.  I don't know what is going to happen next.  I guess Forrest Gump's mama was right when she said "Life is like a box of chocolates you never know what your gonna get."

Karen

Had biopsy in September, and

Had biopsy in September, and was diagnosed with stage 1, grade1 endometrial adenocarcinoma. After surgery in October, surgeon said stage 1, but a little more cancer than she expected. 26 lymph nodes were taken. Pathology report showed stage 3a, grade 2 endometrial adenocarcinoma. One ovary was attached to uterus and had a few cancer cells on surface. 

Had my first round of far no and Taxol in November. Did fine with Carbo but had 2 strong reactions to taxol. Doctor wanted doxorubicon and carbo but we also discussed desensitization to Taxol and decided to try, but it didn't work. Had ct scan which showed no evidence of disease. Did doxorubicon, and have 3rd treatment on Wednesday. Head was really hurting yesterday and my husband shaved it last night. I am fortunate to have doctors I really like, and they do say I have a very good chance of being cured, so I'm crossing fingers and praying hard. I am 55. 

saltycandy13 said:

A newbie!

Sorry I didn't see this thread before.

My name is Karen.  I'm 59 but don't look a day over 58.  (see I still have my sense of humor)  Currently waiting for a total hysterectomy.  Yes, they are taking all my parts out probably in January but don't have a date seeing  I have been waiting already 3 weeks and have 2 weeks to go just to see the gyno-oncologist.

I've only had a gyno at this point that wanted to do the surgery but we found the "expert" I guess.  And very fearful, tearful, disgusted and yes, I do pray a lot.  Have a Priest I see when I can and he is available.  I suppose at times I'm being selfish.  Afterall, I'm close to 60 and hell!  kids are born with cancer, but still not thinking it's time for me to go, but that as my Priest says "it's God's Will."

Sorry for the gloom and doom.  But that's where I am right now.  It's Christmas, I am so afraid of the new year.  I don't know what is going to happen next.  I guess Forrest Gump's mama was right when she said "Life is like a box of chocolates you never know what your gonna get."

Karen

a newbie

I am right there w/ you Karen, I am only 59. I too am terrified of what thre new year will bring but my spirituality helps me. I was feeling the same way-here I am caught up in my grief and fear and then seeing the children that are affected by cancer and other diseases and how brave they are,makes me feel like I really shouldn't be cpmplaining. I am in  awe of their courage! Second round of chemo on wed for MMMT.